Ttc after tfmr

(6 Posts)
SharedLife Mon 17-Oct-16 20:07:56

Hi all,

I'm just wondering if anyone went on to try again after tfmr due to acrania or another severe ntd?
Is it correct that after one ntd your risk of another is 2-3%? Is that with or without the 5mg folic acid?
For anyone who has gone on to ttc again, how did you outcome the fear of it happening again? I feel I am in a terrible lose/lose situation. I can't come to terms with the idea of not having another baby, it is simply heartbreaking, but I don't know if I would be able you cope with having to go through with another termination if that was necessary.
I don't know how to move on. Any stories or advice is really welcome.

wowwee123 Mon 17-Oct-16 20:17:09

my stories slightly different but i guess we are in a similar place.

my son was stillborn at 27 weeks. he was also diagnosed with a serious physical disablity at 20 weeks but we were told it was not life threatening / limiting so chose to carry on with the pregnancy however it clearly wasnt meant to be.

the condition he had was not generic or hereditary and was literaly a one in a 10000 chance. it wasnt linked to stillbirth either so although i am quite sure the condition will never happen again, i dont have the same reassurance that the next baby will make it to term.

like you i am bloody petrified! i know i want to be a mother so i know im jusy going to have to get on with it but the thought of having to go through thay again with a second child is just frightening.

i keep myself going by telling myself i have got through it once so if the worst should happen again i can survive it.

also if you dont try you will never know.

really though nine months of pregnancy and worry would be enough to see me off. its so hard.

i was advised 5mg folic acid at least 3 months prior to ttc. im also trying to make some healthy changes to my diet and loose some weight (high bmi). i had a mmc prior to son as well so thats something else im scared of.

wowwee123 Mon 17-Oct-16 20:18:02

oops. basically i am happy to hand hold through this as i guess i am having similar thoughts.

its been over a year since my son was born and i am coming off contraception the end of this month

KittyandTeal Tue 18-Oct-16 18:28:08

I'm so sorry for your loss.

You should be booked in for a debrief from a fetal medicine specialist around 6 weeks after your loss. They should put a plan in place for any further pregnancies that involves scans and any extra medication that you may need. They should also be able to give you stats on reoccurrence rates. I don't have experience of ntd but our dd2 had a trisomy which also has a low reoccurrence rate.

I was treated brilliantly in my subsequent pregnancy, although, sadly ds died at 14 weeks. They also did a debrief after his loss and insisted on another pregnancy care plan even though we have said no more ttc so no chance.

I would suggest ARC, they have a great forum for women ttc after a tfmr which is really supportive. They can also talk to you about advice etc. Local sands groups also often run pregnancy after loss groups that are brilliant.

To be totally honest I found ttc between dd2 and ds very emotionally and mentally exhausting. Much more so than when we were trying for dd1 or dd2.

AButterflyLightsBesideUs Tue 18-Oct-16 20:51:23

Hello.

Firstly, I am so very sorry you have been through this and lost your baby in such a difficult way flowers

I had a baby diagnosed with acrania last year. We chose to have a tfmr which took place on New Years Eve when I was nearly 14 weeks. Pathology showed that our baby boy also had Edward's syndrome. The consultant said that the likelihood in our case was that the acrania was caused by the chromosone problem, rather than being a standalone ntd, but she couldn't rule out the possibility that we'd managed to have both a ntd and T18 as separate events in the same pregnancy. Consequently she prescribed 5mg/day folic acid until I am past childbearing age.

I'm a bit hazy now on the numbers but I know the consultant said that by taking the 5mg folic acid it reduced the chance of another serious ntd by about 75%. Overall the risk is still slightly higher than for the general population but you are right it is around 1-2%. Unfortunately it's not possible to diagnose or exclude acrania until at least 11 weeks so we were advised that no early scan would be offered, pretty much cross your fingers and hope was what they told us.

In the immediate aftermath of loss I felt sure I wanted to try again, as much as anything, I felt this need to "prove" to nature that if I wanted a baby I could bloody well have one thank you very much. After a couple of months the bolshiness faded and I was very scared.

We did decide in May to throw caution to the wind and I fell pregnant straight away. I'm now 26 weeks and so far, so good, healthy looking baby boy. It has been incredibly difficult mentally and emotionally though and I'm under the mental health team having 1-1 CBT with a therapist to try and help manage the anxiety/depression/trauma effects. If you do decide to go ahead, please take care of you. I think therapy or counselling is a must to get through it.

For context I should add that my acrania pregnancy was my third pregnancy. I lost my first daughter at 20 weeks due to an infection, and then went on to have another daughter less than a year later - she's 5.

One thing I will say having had two second trimester losses, is that for me the first was the worst. I suspect there are many many factors at play here, but there was an element of having been through it once before so the second time I didn't experience the same profound and traumatic shock, nor was the process frightening and bewildering. In some way, having done it before made it easier for me to navigate, and that helped me feel able to try again.

I wish I could promise you it will all be ok next time. The chances are it will, but equally the chances were that it would be fine last time and it wasn't, so I completely understand not being reassured by statistics. I hope you can find your way, in time, to the right decision for you flowers

SharedLife Wed 19-Oct-16 08:01:16

Thank you so much for sharing with me.
I'm so sorry for all your losses flowers

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